Hydrocephalic

Back To School Time!

It’s that time of the year – back to school time! Most kids around the country will have returned to school this past Tuesday, September 4th, if they have not already. This can be an exciting yet stressful time for parents and kids alike. While kids may be worried about facing the academic rigors of […]

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September is Hydrocephalus Awareness Month! Here’s What You Can Do…

by Jennifer Bechard, Support Group Liaison This September, for Hydrocephalus Awareness Month, the Hydrocephalus Association (HA) invites you to celebrate and honor the estimated one million Americans touched by hydrocephalus. As a community, we can do this by raising awareness about hydrocephalus either in our own circles or to the larger networks of which we […]

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…times, they are a changin’

  By Dawn Mancuso “…Come senators, congressmen, please heed the call” -Bob Dylan July has been an incredibly busy month for the Hydrocephalus Association.  In fact, it is safe to say that the word busy hardly does it justice.  At the beginning of the month, we wrapped up our biennial conference on hydrocephalus in Bethesda, […]

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Welcome to our new office!

It was a bittersweet moment to close and lock the door of Suite 705 for the final time at 870 Market Street in San Francisco on July 31st. After 29 years of being headquartered on the west coast, the Hydrocephalus Association has moved our national headquarters to the Washington, D.C., area. Our new office location […]

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The 12th National Conference on Hydrocephalus

    The Hydrocephalus Association held it’s 12th National Conference on Hydrocephalus in Bethesda, MD from June 27th through July 1st, 2012. As always we gathered to re-establish our sense of community and educate ourselves about hydrocephalus. Conference Highlights: Advocacy Day On Thursday, June 28th, over 200 participants visited their congressional representatives to lobby for […]

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Welcome Aisha Heath, CFRE

The Hydrocephalus Association is pleased to announce Aisha Heath, CFRE  as the new Director of Development. Ms. Heath has devoted her professional career to raising awareness and resources for national organizations supporting the health and well-being of children and families. She has worked in the non-profit sector for over 12 years, fundraising for a variety […]

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Hydrocephalus Research Conference Highlights

By Paul Gross, Chairman of the HA Board of Directors The third NIH sponsored research conference on hydrocephalus concluded on July 11th  and by all accounts was a resounding success!  Entitled “Opportunities in Hydrocephalus Research: Pathways to Better Outcomes“, the conference featured a broad spectrum of thought leaders from bench scientists in molecular biology to […]

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Advocacy Day and the 12th National Conference

Famed football coach Vince Lombardi once said that “My teams have never lost a football game. They just occasionally run out of time to win it.” Here at Hydrocephalus Association, we know first-hand just how time is of the essence. Each day, more children and adults are diagnosed with hydrocephalus. And, those previously diagnosed with hydrocephalus […]

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Hydrocephalus Association Brings its Message to Capitol Hill!

On Thursday, the 28th of July, the second day of our conference, we held our second Advocacy Day on Capitol Hill, “Climbing Capitol Hill for a Cure.”  Hundreds of members of the hydrocephalus community braved the intense heat of a Washington, DC summer day to bring our message of increased funding for hydrocephalus research to […]

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“Reason for Hope” Campaign Receives Big Boost

On June 21st, the Hydrocephalus Association (HA) announced the launch of its new $3 million dollar fundraising campaign called “Reason for Hope.”  We are very pleased to announce that we have received a commitment for a gift of $500,000 to that campaign.  The anonymous donor requested that these funds be used in support of HA’s […]

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Historical Perspective of Hydrocephalus and its treatment & HA History: 1983 – 2012 – then, now and the future

Ever wanted to know more about the history of hydrocephalus? When was it discovered? How has it evolved over the last 2500 years? Would you like to know more about the work of Dr. Hakim? How about the humble beginnings the Hydrocephalus Association? Well, we invite you to attend the 12th National Conference in Bethesda, […]

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“Reason for Hope” – HA’s New Research Campaign

By Tom Smith We are pleased to announce our new $3 million dollar fundraising campaign called “Reason for Hope”. Its purpose is to fund a five year Research Initiative plan intended to push hydrocephalus research forward. The funds will be used to implement three areas deemed crucial to eventually finding a cure for hydrocephalus. Stimulate […]

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Only One Week Away!!! 12th National Conference on Hydrocephalus! What it’s all about!

Our biennial hydrocephalus conference is one of the traditional cornerstones of the Hydrocephalus Association’s commitment to meeting the far ranging needs of our community. This year, from June 27th through July 1st, the HA invites you to join us in Bethesda, MD at our the 12th National Conference on Hydrocephalus. Education, education, education… Hydrocephalus is […]

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Benjamin Warf, MD – To Speak at 12th National Conference on Hydrocephalus

We are honored and excited to announce that Benjamin Warf, MD is joining our faculty this June in Bethesda, MD.  Dr. Warf is scheduled to give the Keynote Address during lunch on Saturday June 30th.  His Inspirational Keynote Address will encompass his work treating hydrocephalus in Sub-Saharan Africa. Dr. Warf began his career in pediatric […]

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NetFlix Founder Headlines Hydrocephalus Research Conference

NetFlix Founder and former member of the Hydrocephalus Association Board of Directors Marc Randolph will be a keynote speaker at the upcoming research conference, “Opportunities in Hydrocephalus Research: Pathways to Better Outcomes,” scheduled for July 9 – 11, 2012, in Seattle, Washington. Mr. Randolph was the founding CEO of NetFlix, and served as a member […]

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NIH Supports Upcoming Hydrocephalus Research Conference

We are excited to announce that we have received a commitment from the National Institute of Neurological Disorders and Stroke (NINDS), the leading federal funder of brain science at the National Institutes of Health (NIH), to support our upcoming research conference entitled “Opportunities in Hydrocephalus Research: Pathways to Better Outcomes” in Seattle on July 9-11, […]

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HA Partners with HCRN to Promote Groundbreaking Clinical Research

By Dawn Mancuso, FASAE, CAE, Hydrocephalus Association CEO I am pleased to announce that the Hydrocephalus Association (HA) and the Hydrocephalus Clinical Research Network (HCRN) have signed a partnership agreement that will ensure the continuation of HCRN’s hydrocephalus research. We are honored to be partnered with the first and, so far, only clinical research network […]

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Research Conference Sets the Stage for Large Research Investment

by Paul Gross, Chairman of the HA Board of Directors I am excited to announce that Hydrocephalus Association (HA) has partnered with the Rudi Schulte Research Institute (RSRI) to release a major new Request for Applications (RFA) in conjunction with our upcoming research conference in Seattle on July 9-11.  Rudi Schulte was one of the […]

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Slow and Steady wins the Race

By Dawn Mancuso, FASAE, CAE, HA CEO Sometimes we all encounter frustration. We feel like we work and we work, but that things just don’t change as fast as we would like or need.  At times like these, when my patience is wearing thin, I often look to those wiser than myself for inspiration and […]

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Climbing Capitol Hill for a Cure! A Day of Action

By Jennifer Bechard, Support Liaison My first conference was at the 11th National Conference on Hydrocephalus in Cleveland OH and it certainly was an experience that I will cherish forever. Meeting world-renowned medical professionals, watching a live endoscopic third ventriculostomy (ETV) surgery, marching in a parade and hearing researchers speak about the advancements and works […]

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Opportunities in Hydrocephalus Research: Pathways to Better Outcomes

The Hydrocephalus Association, in conjunction with several other institutes and organizations, is pleased to announce a landmark research conference to be held July 9-11, 2012 in Seattle, WA. The title of the conference is “Opportunities in Hydrocephalus Research: Pathways to Better Outcomes.” The focus will be the discussion of current hydrocephalus research from several different […]

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12th National Conference: Tips on how you can afford it!

The National Conference on Hydrocephalus is our biennial gathering to self-educate and make or renew connections. Join doctors, nurses, parents, children, people living with hydrocephalus and people affected by it, as we celebrate our community. While we strive to keep costs down for attendees and provide some financial aid for registration, there are other costs […]

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Astronaut Mark Kelly to Headline our 12th National Conference

By Dawn Mancuso, HA CEO Captain Kelly’s biographical information generously provided by Keppler Speakers I am so excited about this news I just had to make it the subject of my blog this month – Captain Mark Kelly will be speaking at our hydrocephalus conference in June! Mark Kelly is an American astronaut, retired US […]

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The Hydrocephalus Association co-hosts the 2012 Research Conference

This July, the Hydrocephalus Association is co-hosting a ground-breaking research conference designed to bring together pre-eminent researchers and scientists to advance research around hydrocephalus. The purpose of this conference is to provide an update on the latest innovations and findings going on in hydrocephalus research, and to strategize about the next great breakthroughs. Scheduled for […]

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New HA School WALK Program, a Win-Win

By Randi Corey, National Director of Special Events and Volunteer Support At the 2012 Veteran WALK Chair’s meeting Hydrocephalus Association introduced its new School WALK program.  The program was the brainchild of Long Island WALK Co-Chair, Mia Padron.   The event Mia coordinated last fall raised over $4,000 with 114 kids participating in their own “mini-WALK” […]

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New HCRN Study Up and Running

By John Kestle, MD, MSc, FRCSC, FACS (re-posted with the author’s permission) The HCRN has successfully launched a new, potentially ground-breaking study across the Network. This study, titled Ventricular Involvement in Neuropsychological Outcomes in Pediatric Hydrocephalus, or VINOH for short, is funded by a Mentored Young Investigator award from the Hydrocephalus Association received by Dr. […]

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Ever Wonder What it’s Like to Be Part of a Hydrocephalus Conference?

Watch the highlights from our last conference on hydrocephalus, which took place in Cleveland, OH in 2010. We invite you to register for the upcoming 12th National Conference, which will be held in Bethesda, MD from this June 26th through July 1st.

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re•search /ˈrēˌsərCH/

By Dawn Mancuso, HA CEO A very famous author from across the pond (hint: “…that which we call a rose by any other name would smell as sweet”) once asked “What’s in a name?” As I travel to meetings on behalf of the Hydrocephalus Association (HA), and as I talk to more and more people […]

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There are a million reasons to walk….HA WALKs Update!

By Randi Corey, HA Director of Special Events New WALK Chair’s Training Meeting: In February Hydrocephalus Association held the 2nd annual training meeting for HA’s New WALK Chairs in Charlotte, NC.  New Chairs included Shawn and Julie Robinson (starting a new WALK in Northern Kentucky/Cincinnati), Genia Hastings and Melissa Arsenault (taking on a new WALK […]

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Meet Teens Take Charge (TTC) Council Member: Madison

By: Madison Pardi Hi, my name is Madison and I am 14 years old and a freshman in high school. I was diagnosed with hydrocephalus when I was 10 weeks old. I have had 5 surgeries and my last shunt revision was 11 years ago. When I was a baby I crawled and walked later […]

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12 National Conference on Hydrocephalus: Travel Tips

As you make your way to the 12th National Conference on Hydrocephalus in Bethesda, MD, here is some information to help you plan your trip. Area Airports 1)    Washington Dulles International Airport Chantilly, VA www.metwashairports.com/dulles/dulles.htm Distance from hotel: 25 miles 2)    Ronald Reagan Washington National Airport Arlington, VA www.metwashairports.com/reagan/reagan.htm Distance from hotel: 23 miles 3)   […]

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A Season of Change

By Dawn Mancuso, HA CEO I do not know what this winter has been like where you live, but here in the D.C. area, the winter has been much more like a lamb than a lion. Not that I am complaining, mind you, but it does mean that the trees and plants in the area […]

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Advocacy Day in Washington, DC: Climbing Capitol Hill for a Cure!

“On Hydrocephalus Advocacy Day, May 30, 2006, 120 hearty souls braved the heat in Washington, D.C. on a mission to ask our elected representatives to devote more federal support to hydrocephalus research and treatment. I was moved by everyone’s vibrant courage. Though most of you had never pursued legislative advocacy before, we did amazing work […]

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Hydrocephalus Association’s Resident’s Prize: Dr. Ashley G. Tian

One way the Hydrocephalus Association promotes research and leadership in hydrocephalus is through our annual Resident’s Prize. This prize is awarded each year to the most promising hydrocephalus-related research paper presented by a neurosurgical resident at the Pediatric Section meeting of the American Association of Neurological Surgeons/Congress of Neurological Surgeons (AANS/CNS). The prize is designed […]

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Happy Valentine’s Day! Let’s Show we Care!

The Hydrocephalus Association is dedicated to helping families and individuals whose lives have been touched by hydrocephalus and the professionals who work diligently to create a brighter future through medical excellence and research. There are many ways to show your love and care to the community. We invite you to:     Register to attend […]

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Register Today for the 12th National Conference on Hydrocephalus!

June 27-July 1, 2012 Bethesda North Marriott Hotel & Conference Center, Bethesda, MD The goal of the conference is to provide tools and connections to address the medical, educational and social challenges of living with hydrocephalus and to provide the opportunity for an enjoyable get together! Hydrocephalus is a chronic condition for which there is […]

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From the CEO: Another way to say “I Care”

As I sit and write this blog to you, I am thinking about what the month of February means to the hydrocephalus community. Now, for many people, it is the month when the Super Bowl takes place – the culmination of the season-long competition to find out which team goes home with the coveted prize […]

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Normal Pressure Hydrocephalus Guidelines

By Tom Smith and Michael Williams, MD In 2000, the late Anthony Marmarou, PhD convened an independent study group to begin the process of addressing one of the major issues surrounding Normal Pressure Hydrocephalus (NPH).  After convening, these experts published five guidelines concerning NPH. The guidelines, for the first time, rigorously reviewed the existing evidence […]

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Hydrocephalus Awareness Hits the Ice

By Jordan Faigen, National Campaigns Manager Are you looking for great ways to raise money as a WALK participant? Eileen Rodger, the HA South Florida WALK Chair, spent an evening on the ice and raised over $1,000 in a matter of hours. Read her inspiring story and explore your community for creative fundraising opportunities, then […]

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Tributes to a Passionate NPH Physician Advocate — The Passing of Harold O. Conn, MD

Harold O. Conn, MD was a world-famous doctor specializing in diseases of the liver.  After his retirement he developed Normal Pressure Hydrocephalus (NPH) and thus embarked on his second career which was to study and spread awareness of this condition.  His perspective was unique and informed, and his work was generous and insightful.  In this […]

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